‘It’s heartbreaking, frightening’: parents worried about their children’s future

Children with intellectual disabilities face a lack of adequate educational opportunities beyond the age of 16, leaving many families in a state of uncertainty about the future.

“We have no clear direction at the moment. There is a lot of uncertainty right now, as the scholastic year draws to an end. Parents of children who are 15 or 16 are really anxious about where their kids will be next year,” said Karen Buttigieg, president of the National Parents Society for Persons with Disability.

Her point was reinforced in a petition put in motion by the mother of a teenager with a disability, asking the ministries of education and inclusion for a clear vision outlining options for school-leaving students with intellectual disabilities.

“This is a particularly vulnerable group of students whose future is not receiving the attention and planning it urgently deserves,” Andrea Waltzing wrote in the petition.

Most children with intellectual disabilities begin their schooling in mainstream settings, supported by learning support educators (LSEs). However, as they grow older, a lack of trained staff in these environments often results in them being moved to resource centres. These centres, originally designed to be visited a few times a week for support services like hydrotherapy, have increasingly turned into full-time special schools.

“This has happened because there just aren’t enough specialised staff,” Buttigieg said. “When schools and parents are left without the proper training or resources, they often don’t have a real choice. That decision isn’t always made because it’s what’s best for the child. It’s because nothing else is available.”

This shift to segregation can have lasting consequences.

“If a child is separated from others as early as five years old, how can we realistically expect them to integrate into employment or community life later on? There’s an underlying message being sent: that they always need something separate, that they can’t thrive in the same spaces as others,” Buttigieg said.

The situation becomes even more difficult after compulsory education ends at 16. Till then, some form of structure usually exists: whether in mainstream schools or specialised programmes with LSE support. But once a student reaches 16, that support often disappears and the path forward becomes uncertain.

If a child is separated from others as early as five years old, how can we realistically expect them to integrate into employment or community life later on?

At present, one possible next step is transitioning to a specialised school such as the Wardija resource centre, which serves students aged 16 to 22. However, places are limited and many parents are already being told there may not be enough room for their children, even if this is the best option for them.

Another route is through MCAST, which offers a two-year course, but students are expected to be independent, a requirement that excludes many. After that, there is often no real transition to employment or further learning and families are left without guidance.

“It’s all rooted in a lack of vision,” Buttigieg said. “The underlying assumption seems to be that these young people will end up in a day centre or at home. Academic learning stops at 16 and there is no assurance that it can continue. But this is the stage when they actually need more ‒ not less ‒  support.”

The gap in opportunities leads to even greater difficulties for families.

Young adults with intellectual disabilities cannot stay home alone, which means they risk further isolation and regression. The impact on parents is significant: many are forced to give up work or pay privately for care, which places a huge financial and emotional burden on families.

Anxiety

One mother shared her personal journey. Her 17-year-old son has a global intellectual delay and each academic year has brought with it a new wave of anxiety.

“Every year you wonder: what class will he be in? Who will his LSE be? How will he be treated? It’s a constant, year-in, year-out concern. But, as he neared the end of secondary school, the worry only grew.”

She explained that MCAST was not a feasible option for her son as they would have had to pay privately for an LSE. That left Wardija as the only viable alternative. But, due to growing demand, the school had to cut certain academic subjects, like computing, which were especially important for her son.

She expressed disappointment that national strategies, like the one on digital education, made no mention of the needs of students with disabilities.

While her son is settled, she is deeply worried about what will happen when he turns 22.

Our children risk becoming outcasts

“Even though our children have disabilities, we still want them to learn and grow. I was very happy with the support from kindergarten through to 16. But what happens after?

“Our children risk becoming outcasts and the burden falls on parents. My son can learn. He just needs time and repetition. Even if he only learns five minutes’ worth in an hour, that still gives him dignity. But all that human energy, all that potential, is being wasted… It’s heartbreaking. It’s frightening. And it’s deeply discouraging,” the mother said.

Buttigieg added that there is a pressing need to improve how we track educational outcomes for young people with disabilities.

She stressed that the battle for parents does not stop when their child enters the education system ‒ it continues long after. While other parents see age 16 as the beginning of their child’s independence, for parents of children with disabilities, it often marks the moment their responsibilities grow even more overwhelming.

“There is not even the certainty that there’s somewhere to go,” she said.

“There’s a very real possibility that your child will end up stuck at home. And, so, the fight becomes even bigger ‒ fighting for the right to education, employment, community inclusion and personal assistance. And all the while, you know that your child is growing older and so are you. You won’t be here forever.”

No hope

Waltzing, whose teenager is about to leave Guardian Angel resource centre, initiated a petition addressed to Education Minister Clifton Grima, Inclusion Minister Julia Farrugia and their respective shadow ministers, Justin Schembri and Graziella Galea.

The petition noted that acceptance to Dun Manwel Attard Young Adult Education Resource Centre (Wardija resource centre) is down to the decision of a board and parents are kept in the dark about the process and criteria.

“This ongoing lack of communication is creating severe anxiety among parents,” the petition said.

More resources at the resource centres were needed.

“For years, what should have been a centre of excellence… has been a place where parents feel all hope for their children’s future comes to die.”

The petition also demanded: a written update on outlining options for school-leaving students with intellectual disabilities; confirmation of placements at Wardija or equivalent facilities for school-leaving students with one-to-one statements; a clear, sustainable post-16 transition plan, co-designed with families and professionals; direct investment in physical human resources, especially on-site behavioural therapists and speech and communication specialists; and ongoing professional training for tutors using tools proven to help individual students flourish.

The petition can be accessed here. It is suggested that those who sign the petition include their ID numbers next to their names.